Wednesday, October 29, 2008


The dreaded Clinic...I don't think I'm ever going to go back (j/k..I have to). But seriously....rough day. It took 5 sticks in the lab to get blood. Ugh! Then soon after I find out that one of my best CF friends past away last night. Then I get into clinic...wait a good while. I couldn't go get something to eat, in fear that I would miss the doctor. I woke up at 5:15, left the house at 6:15, signed in at 6:45..and lo and behold...I was #2 on the list! Evidently, luck was not with me today, because I saw the exact doctor I didn't want to see. So of course, nothing was done...except encouraging me to get a GI consult regarding my recent weight loss. So I'll probably go ahead and get the consult, just to be on the safe side. But as far as my chronic fatigue..not really sure. My labs showed that I was dehydrated and my WBC count dropped from 2 weeks ago. My PFTs were also down, but then again, I didn't have the energy to put behind them. I'm probably going to email another doctor tonight to get a second opinion. The other possibilities are that I am still too immunosuppressed, that my body cannot fight off these viruses I keep getting. So one doctor would like to see me stop the photopheresis to see if that helps bring my energy and WBC count back up. Also, it still could be Mono. Or thirdly, it could just be the chronic rejection. But today I felt like I've never been so fatigued in 4+ years. So we'll see how things play out.

Tomorrow I am volunteering and speaking at our local CFF Golf tournament. I've done this for the past 3 years. I'm excited, and are just praying I have the energy!! Tomorrow afternoon/evening I will travel along with a few other people to the visitation services for Angel (about a 2 hour drive). Then on Friday, I will attend her funeral service, and will have a few people tagging along as well. I'm going to try and work a little Friday morning before leaving for the funeral (which is at 12 noon). Lord give me the strength and energy to get through the next few days.


Christy said...

Have they checked you for CMV? With the stomach issues and fatigue, it sounds suspicious.
I'm praying that the pain goes away, that you gain some weight back, that your lobes remain strong and healthy, and that your energy comes back up.
I hope you get answers soon!

Marjolein said...

I was going to say what Christy has said. Have they checked your CMV? Or EBV for that matter, as EBV is the cause for mono so that could rule mono out or you would have an idea that it could be that.

I hope you'll get some answers soon and that you can get your energy back.

I know how it feels, too tired to do anything. It's so bad, specially post tx, since you are hoping for so much more.

Big hug
24/CF/2 years post tx
post tx dxed with emphysema